INFLAMMATORY LINEAR VERRUCOUS EPIDERMAL NEVUS

MY DAUGHTER WAS DIAGNOSED WITH ILVEN AT BIRTH. SHE IS NOW NINE YEARS OLD. THE EXTENT OF HER ILVEN IS SIGNIFFICANT, IT CURRENTLY COVERS THE LEFT SIDE OF HER BODY (TRUNK,UPPER AND LOWER LEG, BUTTOCK AND HIP.)SHE HAS TRIED COUNTLESS TOPICAL TREATMENTS TO NO EVAIL. BESIDES THE COSMETIC PROBLEMS SHE SUFFERS WITH ILL HEALTH ALSO. SHE HAS HAD NUMEROUS BLOOD TESTS THAT HAVE RETURNED ABNORMAL RESULTS, THE MOST WORRYING BEING AN ESR OF OVER 100 AND AN EOSINOPHILIA OF 5%. SHE HAS ALMOST CONTINUOUS BOUTS OF MALAISE AND SADNESS, HEADACHES, FEVERS, JOINT PAINS (KNEES,WRISTS,FINGERS AND SHOULDERS) BUT THESE ARE LESS FREQUENT IN THE LAST YEAR, SORETHROAT AND STOMACH PAIN. SHE IS UNDER WEIGHT WEIGHING JUST THREE STONE NINE POUNDS EVEN THOUGH SHE EATS LIKE A HORSE. D IS THE ELDEST OF FOUR CHILDREN AND THE ONLY ONE WHO HAS ANY OF THESE PROBLEMS. WHEN D GETS SICK SHE STAYS SICK FOR WEEKS NO MATTER WHAT THE ILLNESS. I WORRY THAT THERE IS SOMETHING WRONG WITH HER BUT I DON'T KNOW WHICH WAY TO TURN TO HELP HER. IF YOU CAN OFFER ME SOME ADVICE AND INFORMATION I WILL BE ETERNALLY GRATEFULL.
              A VERY WORRIED MUM IN LINCOLN

[Alan Rockoff, MD]

I think you should consult with a pediatric physician.  I cannot think of any connection between the epidermal nevus and the worrisome systemic symptoms like malaise, sadness, and frequent illness, not to mention the elevated sedimentation rate and eosinophilia.  A thorough medical, rheumatologic, and psychiatric evaluation would seem in order (the last because sadness may be the cumulative effect of all the rest.)  I'm sorry I can't be more specific than this.

Best.

Dr. Rockoff

[DANNI'S MUM]

THANK YOU FOR YOUR REPLY. I HAVE READ THAT EPIDERMAL NEVUS SYNDROME HAS MULTI SYSTEM INVOLVEMENT, COULD THERE BE NO LINK THERE. IS ILVEN A LITTLE KNOWN ABOUT CONDITION?, I HAVE READ MANY DIFFERING VIEWS ON THIS SKIN DISEASE. WHERE CAN I FIND OUT A REPUTABLE EXPLANATION OF WHAT THIS DISORDER INVOLVES?
IF YOU HAVE THE TIME TO ANSWER I THANK YOU AGAIN.

[Alan Rockoff, MD]

The other systems typically involved are musculoskeletal, cardiovascular, and nervous.  The symptoms and signs you wrote about didn't sound like those.  I do think they deserve to be looked at in their own right.

Good luck.

Dr. Rockoff

[Ann0823]

A related discussion, ILVEN was started.